I am not afraid of dying. But I do fear a path to death riddled with mind-splitting headaches caused by my terminal brain cancer that no medicine can relieve.
Don’t get me wrong. I love life. I want to end my suffering not out of despair or depression, but to maintain some comfort in my final days so that I can pass peacefully, surrounded by the people I love.
The End of Life Option Act means a great deal to me because it would give dying Californians the option to end unbearable pain and suffering. And, like Brittany Maynard, I am using my last days in hospice care to support Senate Bill 128.
Now 35, I was 20 years old when I found out about my brain tumor in 2001. A few years ago, the cancer was in remission for 16 months, but then last year, I was told it had returned with a vengeance.
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I now have Stage 4 brain cancer and an inoperable tumor. My doctors say I will most likely experience a painful death one day very soon. Although I have fought the cancer for many years, I have declined any additional medical treatment to prolong my dying process.
Why should I be forced to live my final days with pounding headaches, double vision, fever, muscular-skeletal pain and memory lapses that are already robbing me of the ability to remember the people I love?
I want my final days to be peaceful. I don’t want my last days clouded by the fear of unbearable suffering ahead. Having the option of medical aid in dying would ease my mind.
As an alternative to medical aid in dying, I am seeking palliative sedation, which involves medicating a terminally ill person into a coma. Nutrition and fluids are withheld until the person dies from disease or dehydration.
Some people claim palliative sedation is an equally gentle alternative to medical aid in dying for patients whose symptoms cannot be controlled while they remain conscious, but there are no guarantees. No one truly knows what people experience when they are medicated to unconsciousness; some may suffer greatly but be unable to move or speak.
I could linger for days or weeks until death occurs. Since I have a young body, if it retains fluid, it could take up to a month to die.
While aid in dying may not be for everyone, I believe it should be available to terminally ill Californians like me who want it. We should be trusted to choose the option most consistent with our values and beliefs. No one should have the veto power to deny this end-of-life option to someone else.
It is unlikely I will live to see the outcome of this legislation, but I urge the Assembly to pass SB 128 so others don’t have to go through what I have gone through at the end of my life.
Michael Saum is a transgender man who lives in West Covina. He entered hospice care on Saturday.